You may paddle against the powerful currents in the Sea of Madness, but you will never again touch solid ground unless you get out of the boat. (an old proverb I just made up)

Monday, December 15, 2014

Madness on the Move

Albert Einstein said that the measure of intelligence is the ability to change. I don't know if the deterioration of cognitive brain activity due to dementia and Alzheimer's can be called a loss of intelligence, but I do know that change is not something a person living with dementia can readily adapt to or accept.

Change is loss.

For our mother, what a difference six months makes. And what a difference it does not.

Mom has  moved into a new facility and so far, it's utter hell.  "Swanky" is what she calls her beautiful new room and elegant dining hall and landscaped courtyard. And she's right. It's lovely.  But the move has all but erased what progress we've made over the months  in mitigating her aggressive behavior and her general acceptance of her need for assistance.

And, change, to Mom, is loss. Every little loss compounds all her other losses and she relives them all again. The loss of her home, her pets, her furnishings, her career, her former husbands, her exciting youth – she relives the loss of them all.

Each and every one.

We've seen this before. Mom's first assisted living center took weeks for her to accept but as her dementia progressed, the relative independence of her living situation became dangerous. She needed more intense supervision and skilled nursing. After a brief hospital stay, Mom moved to a second facility where, once again, she had trouble adjusting. But she underwent physical therapy, speech therapy and occupational therapy for the 100 days that Medicare would fund her recovery and about the time she decided she loved the place, her time was up and a permanent spot could not be found for her there.

Another change. More loss. More "I want my life back" even though she cannot read a medicine bottle or walk to the bathroom or do any of the mechanical things it takes to live alone.

So, off to her third and hopefully FINAL living center. Once again, the adjustment is miserable. She's hostile She's got new aids, new nurses, a new room, new neighbors, new routines, and new furnishings. One thing I've learned about dementia patients: they need consistency. They find comfort in the familiar. They feel safe in their routines. They need to recognize faces. When you disrupt the things they've come to depend on as stationary, it's like yanking their walkers right out from under their feet and they relive the pain of losing their independence.

There are all kinds of quotes about change and how lack of it causes the mind and body to decay. If this is the case, Mom should be flourishing in her new environment because she's experienced so much change. But her reluctance to accept those changes is natural and common for patients with dementia and Alzheimer's. For Mom, it compounds her mental and physical issues and gives her something to mourn.

Day after day after day.

We do have our light moments, though.

I'll concede that while it is agonizing to watch Mom's aggression, intolerance, and distorted memories manifest themselves into physical and emotional combat with anyone who happens to be in the room, these moments are peppered with absurdities that would evoke pity were my sisters and I  not so desperate for a breath of relief, even comic relief.

"Kitty, kitty. Here, baby, come here," she says as she stirs her coffee with her index finger.

"Mom, your cat is not in your coffee cup."

"Oh, I know. I know. I'm just checking."

We prefer these lighthearted moments of confusion to the accusations, insults, paranoia, and delusions, but we see an increase in both when Mom has to move.

Change exacerbates her dementia.

So, my best advice to anyone considering moving a parent with dementia or Alzheimer's is to weigh carefully the necessity. We had no choice the first two times but given one, we would not move Mom again..

Change is loss.

Every. Single. Day.